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'Waiting at the dinner table for scraps': a qualitative study of the help-seeking experiences of heterosexual men living with HIV infection.

ABSTRACT: To characterise the help-seeking experiences of heterosexual men living with HIV infection and explain these experiences in relation to the broader social relations and discourses in which they are embedded.Qualitative study using focus groups and theoretically informed constructionist grounded theory.With one exception, focus groups were conducted in the offices of community-based AIDS service organisations across Ontario, Canada.40 HIV-infected heterosexual men aged 18 years or older.Heterosexual men living with HIV perceive themselves to be relegated to the margins of a health care and service field that was developed historically within a context that privileges the priorities of gay men and heterosexual women living with the virus. Specifically, gay men are better positioned than heterosexual men when vying for the services and recognition of AIDS service organisations due to their social capital within these agencies, thereby benefiting by virtue of their membership with the group perceived to control the decision-making apparatuses when resource allocation and programme development are at stake. Relative to women, heterosexual men are poorly positioned due to their negative symbolic capital, derived from being perceived as the 'guilty' parties in the context of heterosexual HIV transmission. As a result, the material and support needs of women have been prioritised, while those of heterosexual men living with HIV remain largely unaddressed.Heterosexual men living with HIV are operating within a health and service field that has not kept pace with their increased representation among the population of persons living with the virus. Researchers, clinicians and policy makers should strive to integrate heterosexual men living with HIV in decision making and community-based research initiatives that build capacity among this group while simultaneously generating a research and policy agenda specific to the concerns of this growing demographic.

SUBMITTER: Antoniou T

PROVIDER: S-EPMC3401825 | biostudies-other | 2012

REPOSITORIES: biostudies-other

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'Waiting at the dinner table for scraps': a qualitative study of the help-seeking experiences of heterosexual men living with HIV infection.

Antoniou Tony T Loutfy Mona R MR Glazier Richard H RH Strike Carol C

BMJ open 20120717 4

<h4>Objectives</h4>To characterise the help-seeking experiences of heterosexual men living with HIV infection and explain these experiences in relation to the broader social relations and discourses in which they are embedded.<h4>Design</h4>Qualitative study using focus groups and theoretically informed constructionist grounded theory.<h4>Setting</h4>With one exception, focus groups were conducted in the offices of community-based AIDS service organisations across Ontario, Canada.<h4>Participant ...[more]

PMID: 22805006

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Project description:OBJECTIVES:Vitiligo is a relatively common autoimmune condition causing loss of skin pigment. Around 1 in 100 people in the UK develop vitiligo. It can have a significant impact on quality of life for many of those affected. How people access information and help for vitiligo may influence how they manage such impact. We aimed to explore people's views and experiences of seeking health information and help for vitiligo. DESIGN:Qualitative analysis of free-text responses to four open-ended questions in an online survey. SETTING:Online survey conducted in the UK between February and March 2016. PARTICIPANTS:A survey link was emailed to 675 members of The Vitiligo Society, a UK-based charity providing information and support for people with vitiligo. One hundred and sixty-one members responded to the survey (24%). RESULTS:Many participants wrote extensive free text, often reporting frustration with help-seeking. They perceived general practitioners (GP) as their primary source of advice but felt that GPs had low awareness of available treatments. Where GPs appeared sympathetic or signposted towards further information this was appreciated, even where people felt their GP had not seemed knowledgeable. Many felt that vitiligo was dismissed by health professionals including GPs and dermatologists as 'cosmetic', which upset those who experienced substantial impact. Participants expressed concerns about the credibility of online information on vitiligo and the need for reliable, detailed information, as well as a desire for support with managing its psychosocial impact. CONCLUSIONS:Information and help-seeking needs of people with vitiligo currently appear to be poorly met, even among members of The Vitiligo Society, who are likely to have received more information than others. People with vitiligo would welcome greater health professional awareness of available vitiligo treatments. Acknowledging the psychosocial impacts of vitiligo and signposting towards credible information are also welcomed.

Project description:BackgroundLong duration of untreated psychosis (DUP) is associated with poor outcomes and low quality of life at first contact with mental health services. However, long DUP is common. In order to inform initiatives to reduce DUP, we investigated service users' and carers' experiences of the onset of psychosis and help-seeking in two multicultural, inner London boroughs and the roles of participants' social networks in their pathways to care.MethodIn-depth interviews were conducted with service users and carers from an early intervention service in North London, purposively sampled to achieve diversity in sociodemographic characteristics and DUP and to include service users in contact with community organisations during illness onset. Interviews covered respondents' understanding of and reaction to the onset of psychosis, their help-seeking attempts and the reactions of social networks and health services. Thematic analysis of interview transcripts was conducted.ResultsMultiple barriers to prompt treatment included not attributing problems to psychosis, worries about the stigma of mental illness and service contact, not knowing where to get help and unhelpful service responses. Help was often not sought until crisis point, despite considerable prior distress. The person experiencing symptoms was often the last to recognise them as mental illness. In an urban UK setting, where involved, workers in non-health community organisations were frequently willing to assist help-seeking but often lacked skills, time or knowledge to do so.ConclusionEven modest periods of untreated psychosis cause distress and disruption to individuals and their families. Early intervention services should prioritise early detection. Initiatives aimed at reducing DUP may succeed not by promoting swift service response alone, but also by targeting delays in initial help-seeking. Our study suggests that strategies for doing this may include addressing the stigma associated with psychosis and community education regarding symptoms and services, targeting not only young people developing illness but also a range of people in their networks, including staff in educational and community organisations. Initiatives to enhance the effective involvement of staff in community organisations working with young people in promoting help-seeking merit research.

Project description:INTRODUCTION:Up to 1 in 4 pregnancies and 1 in 20 subsequent pregnancies end in miscarriage. Despite such prevalence the psychosocial effects are often unrecognised and unsupported. In the absence of any biomedical sequelae among men such marginalisation may be intensified. Men living through multiple miscarriages may also find any grief or anxiety intensified by loss of hope for future parenthood, but robust qualitative studies of these experiences are limited. We aim to rectify the deficiency. METHODS AND ANALYSIS:Our qualitative study will adopt the sounds of silence framework designed by Serrant-Green to hear the voices of populations possibly marginalised. We will listen and learn from 30 to 50 men with a history of two or more miscarriages. The research participants will be recruited from a recurrent miscarriage clinic at a large tertiary hospital in England, and from advertisements to be disseminated by the project sponsor and miscarriage charities.Individual telephone interviews supported by a semistructured discussion guide will be audio-recorded, transcribed and anonymised. The transcriptions and any field notes will be interpreted by the framework method of Ritchie and Lewis embedded within the sounds of silence framework. Tentative findings will be presented to research participants in face-to-face focus group discussion, to enable member synthesis to enhance authenticity. The focus group discussion will be audio-recorded, transcribed, anonymised and similarly interpreted to contribute to our final synthesis. ETHICS AND DISSEMINATION:The protocol of this project received a favourable opinion from the West Midlands South Birmingham Research Ethics Committee (16/WM/0423). Results will be submitted for publication in peer-reviewed journals and at conferences, and disseminated via newsletters and social media of our clinical collaborators and miscarriage charities. Outputs are anticipated to inform future policy and practice in the management of multiple miscarriages. TRIAL REGISTRATION NUMBER:ISRCTN 21828561.

Project description:BackgroundAntiretroviral preexposure prophylaxis is a promising approach for preventing human immunodeficiency virus type 1 (HIV-1) infection in heterosexual populations.MethodsWe conducted a randomized trial of oral antiretroviral therapy for use as preexposure prophylaxis among HIV-1-serodiscordant heterosexual couples from Kenya and Uganda. The HIV-1-seronegative partner in each couple was randomly assigned to one of three study regimens--once-daily tenofovir (TDF), combination tenofovir-emtricitabine (TDF-FTC), or matching placebo--and followed monthly for up to 36 months. At enrollment, the HIV-1-seropositive partners were not eligible for antiretroviral therapy, according to national guidelines. All couples received standard HIV-1 treatment and prevention services.ResultsWe enrolled 4758 couples, of whom 4747 were followed: 1584 randomly assigned to TDF, 1579 to TDF-FTC, and 1584 to placebo. For 62% of the couples followed, the HIV-1-seronegative partner was male. Among HIV-1-seropositive participants, the median CD4 count was 495 cells per cubic millimeter (interquartile range, 375 to 662). A total of 82 HIV-1 infections occurred in seronegative participants during the study, 17 in the TDF group (incidence, 0.65 per 100 person-years), 13 in the TDF-FTC group (incidence, 0.50 per 100 person-years), and 52 in the placebo group (incidence, 1.99 per 100 person-years), indicating a relative reduction of 67% in the incidence of HIV-1 with TDF (95% confidence interval [CI], 44 to 81; P<0.001) and of 75% with TDF-FTC (95% CI, 55 to 87; P<0.001). Protective effects of TDF-FTC and TDF alone against HIV-1 were not significantly different (P=0.23), and both study medications significantly reduced the HIV-1 incidence among both men and women. The rate of serious adverse events was similar across the study groups. Eight participants receiving active treatment were found to have been infected with HIV-1 at baseline, and among these eight, antiretroviral resistance developed in two during the study.ConclusionsOral TDF and TDF-FTC both protect against HIV-1 infection in heterosexual men and women. (Funded by the Bill and Melinda Gates Foundation; Partners PrEP ClinicalTrials.gov number, NCT00557245.).

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'Waiting at the dinner table for scraps': a qualitative study of the help-seeking experiences of heterosexual men living with HIV infection.

Publications

'Waiting at the dinner table for scraps': a qualitative study of the help-seeking experiences of heterosexual men living with HIV infection.

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